RLS related

For everything and anything else not covered in the other RLS sections.
Polar Bear
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Re: RLS related

Post by Polar Bear »

legs - thank you very much.

Now... you're gonna go and make me well up !! :wave:
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

mikereyes001
Posts: 14
Joined: Wed Aug 14, 2013 5:15 pm

Re: RLS related

Post by mikereyes001 »

Yes, the driving issue is a big deal too. My wife is always asking me if I am ok to drive. I try to take it slow on the road

My doctor did suggest a stimulant in the past (D-Amphetamine Salt Combo...aka...Adderall?) and I didn't see any effect. I would certainly be willing to try the others. I will keep them in mind. Thanks!

legsbestill
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Location: Dublin Ireland

Re: RLS related

Post by legsbestill »

I have been in that sleepless darkside. Visualizing anyone in there is enough to make a person well up and particularly you mods when you do so much for the rest of us. But then I got an image of one person holding up a candle and another lighting one and so forth until the darkside is punctuated with little lights. It was an immensely comforting image and exactly mirrors the feeling of discovering this forum.
In addition to all the personal suffering, one of the awful things with rls is that one feels so alone. You guys make us all feel part of a welcoming, caring, supportive community so that our rls becomes a door through which we can enter into a happy space rather than something only negative. In spite of a happy and full home life and caring family and friends, I felt there was no light for me until I found this forum.

ViewsAskew
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Re: RLS related

Post by ViewsAskew »

legsbestill wrote:I have been in that sleepless darkside. Visualizing anyone in there is enough to make a person well up and particularly you mods when you do so much for the rest of us. But then I got an image of one person holding up a candle and another lighting one and so forth until the darkside is punctuated with little lights. It was an immensely comforting image and exactly mirrors the feeling of discovering this forum.
In addition to all the personal suffering, one of the awful things with rls is that one feels so alone. You guys make us all feel part of a welcoming, caring, supportive community so that our rls becomes a door through which we can enter into a happy space rather than something only negative. In spite of a happy and full home life and caring family and friends, I felt there was no light for me until I found this forum.


My guess is that many of us felt exactly the same way...but likely couldn't express it so eloquently. Thanks for putting it into words that created an emotional imagery blanket that made me feel wrapped in connectedness and love.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: RLS related

Post by Polar Bear »

Very well expressed - I can't hardly believe that it is 11 years since I found this haven.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: RLS related

Post by badnights »

I felt the same way when I found this place. Such love and warmth. So much knowledge. The people here have saved my life, and this place is my anchor. There is no one else I can talk to about it.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

yawny
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Joined: Sun Nov 08, 2015 4:20 pm

Re: RLS related

Post by yawny »

legsbestill wrote:I have spent the evening flicking through the net and notice GHB mentioned frequently as a promoter of deep sleep (albeit with significant reservations). Has anybody tried this?


Legsbestill, the book The Fibro Manual (Liptan) mentions Xyrem, or sodium oxybate as being chemically related to GHB...the author, a doctor with Fibromyalgia, says "fibromyalgia is primarily a sleep disorder, a state of chronic deep-sleep deprivation." Sounds familiar! She says that by far the most effective medication is Xyrem which induces deep sleep. She used it herself for two months before it became unapproved by the FDA and says her symptoms improved significantly. She suggests alternatives and one is Baclofen (Lioresal), a distant cousin of Xyrem. She says Baclofen is a muscle relaxant and antispasmodic medication that increases GABA levels in the brain and total deep-sleep time. The other medication she mentions is Tiagabine (Gabitril).

Wanted to share just in case this is useful to you. Not sure if muscle relaxants are that great for RLS, but maybe you never know until you try.

ViewsAskew
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Re: RLS related

Post by ViewsAskew »

Baclofen is one of the outlier meds that sometimes works for RLS. This could be why...

In the past, a few people used Xyrem...cannot remember the results. A search might provide more insight.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
Posts: 561
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Location: Dublin Ireland

Re: RLS related

Post by legsbestill »

Thanks so much for that, Yawny. Considering my symptoms are now fairly under control, there is no justification for the amount of sleep I am not getting and the marijuana really does not seem to be helping enough any more (which is a pity as my plants are coming along nicely).

badnights
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Re: RLS related

Post by badnights »

indeed, thanks for that yawny
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: RLS related

Post by Polar Bear »

This is information provided by an RLS Sufferer.
This Sufferer is not a member of the Discussion Board and is not available for comment.

"""I had this condition, and it was driving me crazy from lack of sleep. I read a great deal of literature about it, and tried the following remedy* at night before going to bed (all of these amounts are the weights of the specific element or compound, not the weight of the pill): 400 mg calcium, 20 mg melatonin, 400 mg potassium, 3 mg boron, and 250 mg magnesium. In addition, I take the following “semi” electrolytes in the morning: 100 mcg selenium, 2 mg copper, and 12 mg zinc. After about two weeks, this concoction gave me total relief; the same for a friend of mine. I’ve always taken 600 mg of St. John’s Wort (standardized extract) at bedtime, and this may help also because it is a calmative. Also wearing sox to bed helps me sleep.

This is a miserable ailment, and I hope my concoction helps**. Best wishes, and if it works for you, pass it on.

*The research explained that RLS may be caused by the body’s depletion of electrolytes (during the day) which are important in neurotransmission. Supposedly the depletion causes nerve reactions that lead to the leg cramps. All of the above minerals are at or less than the minimum daily requirement. All of these must be chelates or citrates, not oxides. The body does not metabolize oxides well. ""
"
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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